Thursday, April 21, 2011

This is really hard

Being a parent of a child with autism just stinks. I try to make the best of it...but overall it just blows. To give you an example of a few things I've had to deal with today..

Changes in routine
Morgan is very sensitive about changes in her daily routine. If it's something she likes to do, like David took her swimming last night, she's great. But if it's something she doesn't like...she's a mess. We were having a nice lunch today. I was letting her watch an episode of her favorite show, Yo Gabba Gabba and BAM! The power went out. We haven't experienced this before with Morgan. She freaked out and demanded that I turn the TV back on. I tried to explain to her what happened, but it made no difference. She got out of her chair and went to try to turn her show back on. She yelled at me like I was doing it on purpose. Then she calmed down a bit and decided she needed to use the bathroom. She then discovered she couldn't turn on the light...and refused to go in. It wasn't dark in there, but without the light it was scary for her. Then she went around the kitchen trying to turn on the lights, getting upset all over again. Then I had her sit on my lap and she seemed to be better, but then got upset when I tried to hold her, hug her or touch her. She wanted to lie on my chest, but touching her any other way was not OK. Again she started yelling/screaming. I put her in time out. She calmed for a bit then finally agreed to come back to the table and eat her lunch. While eating the power came back on and you'd think she'd won the lottery! Soon Yo Gabba Gabba was back on and all was good with the world.

Morgan has always loved her books. For Christmas we got her a Tag Jr. that "reads" special books for her and plays music. She loves playing with it during her quiet time. For the third time in a week she has destroyed one of her Tag books. She likes to tear the images off the pages of the books (these are "board books" with sturdy pages). She also did this with a non-Tag book yesterday. I don't know if there is something soothing about tearing strips of paper off the pages. And, this is a kid who is in OT for issues with her fine motor skills. Are you kidding me?! She tears the paper in the tiny strips, on purpose! Several times I've offered her junk mail to tear apart and she refuses. What is it about tearing these books? Currently the Tag Jr. (we call him Tag Guy) has been taken away from her. I have no idea if she will learn anything from this.

Overall Cognitive Skills
Or lack thereof? Morgan has tested fine with her cognitive skills... though, much of the time I really don't know if she understands what I am saying to her or what I am trying to teach her. I feel like I'm talking to a wall.

From birth I felt like I never fully bonded with Morgan. I am almost ashamed to say this. She refused to nurse (though my low supply issues may have played a part...though I had the same supply issue with Piper and she fought hard to nurse), and was never a cuddly, snugly baby. There are times I look at her and think "who are you?" It's almost like I miss her. I know she's in there, but I can't reach her.

I know today's just a rough one and other days we'll have great interaction and I feel like we're "connecting." But, lately David and I are honestly just having a really hard time with this. We love our girl so much. She can be so silly, sweet and funny at times, but other times is just so hard to communicate with her.

In conclusion, here's another link to this autism mom blog I love. This women has four kids, one with asperger syndrome, one with ADHD and maybe other issues, I can't remember, but she is so funny and just "gets it."